When I was born, the doctors diagnosed me with a rare birth defect called CHILD Syndrome (congenital hemidysplasia with ichthyosiform erythroderma and limb defects) Congenital means I was born with it. Hemidysplasia means it only affects half of my body. Ichthyosis means skin disorder (I have struggled with painful rashes since birth) Limb Defects means it affects my arm and leg. My left side is underdeveloped leaving my arm very short which tapers down to one digit. My leg had to be amputated when I was an infant.
CHILD Syndrome is a very rare disease that only occurs in females. Each letter of CHILD is an acronym for Congenital Hemidysplasia with Ichthyosis and Limb Defects. Congenital means I was born with the disease. Hemidysplasia means it only affects half of my body. Ichthyosis means skin disorder (I have struggled with rashes since birth). Limb Defects means it affects my arms and legs. I only have one full arm and one full leg. My left side is underdeveloped because of this disease. I havea small digit on my left arm and my left leg ends before my knee.
Although I have this disability, it does not limit me in any way. I played on an undefeated soccer team with my friends in school. When the rash didn't prevent me from wearing my prosthesis, I played on a basketball team and enjoyed many other activities such as rollerblading. At times, I couldn't wear my prosthetic, So I hopped (that's where my nick name came from because my dad calls me hopper) I love to climb trees, jump on a trampoline, swim and many more activities. I can pretty much do just about everything your average eleven year old would do.
"If your ever in a position
where you don't know what to say to someone,
a simple smile will do."
- Stephanie Jallen
